What is Wednesday's Woman?
Courage, honesty, authenticity, and humility--any characteristic that speaks to the power of what can happen when we are in touch with our own humanity. She can be famous or unknown. She can be working wonders at home or on a global scale. A Wednesday's Woman inspires.
Stacy Gill, who blogs at One Funny Motha, found someone who, without question, fits the bill. Part One of her piece, The Real Superwoman is extraordinarily inspiring. Part II is no less extraordinary.
Read Part One here, follow Stacy on Twitter here, and read her humorous musing on motherhood and life at One Funny Motha.
Wednesday Woman:
When Ben was three
Joanne and John decided to have another baby. Joanne had always known even as a
young girl she wanted a family, but she made the decision about another child
with much consideration and caution.
“I don’t want to
die having buried my only child,” she said. “But I didn't want to bring another
child into the world with this disability.”
So she did her homework.
“Part of going to
Chicago was finding out what the risks were in having another child.”
When they’d
originally seen the expert in Chicago, they learned the problem in her first pregnancy was most likely related to a blood flow issue in her placenta. It was
rare and unlikely to happen again. “It was a fluke,” Joanne said.
Still, she wasn't taking any chances. She saw a high-risk ob/gyn at Columbia Presbyterian and ordered up tons of tests.
Still, she wasn't taking any chances. She saw a high-risk ob/gyn at Columbia Presbyterian and ordered up tons of tests.
“We controlled
everything we could,” she said. “I told the doctor I wanted every test.”
Even with all the
precautions, Joanne couldn't control everything, and after her second son,
Sebastian, was born concerns once again began to grow.
“He had five words
at one, but at a year and a half he wasn't using them anymore.”
Joanne took him to
the pediatrician, but the doctor seemed unfazed. Joanne sensed denial, but
she’s convinced the doctor’s denial sprung from his sincere desire to spare her
from another shocking diagnosis. Relying on her instincts and her knowledge as
a special education teacher, Joanne insisted on having Sebastian tested. He was
diagnosed with autism.
“We still went
through the process to come to terms with the diagnosis, but it didn't shock us
when we heard it.”
Joanne hired a
private speech teacher and entered Sebastian in a preschool where he would have
a certified special education teacher working with him in the classroom. In his
first year Sebastian made “phenomenal progress.” He began talking in simple
sentences, and by the middle of the year he was even potty trained. To Joanne
this was nothing short of miraculous. But in his second year his progress
slowed and by kindergarten Joanne saw significant problems.
Since Sebastian
was a higher-functioning kid, he didn't fit the typical model for any of the
special education programs offered by the New York City Board of Education.
Without a program to specifically address his needs, the best solution seemed
to be placing him in an inclusion classroom (one where special education
students mixed with general education students) with two teachers, one general
ed. and one special ed. But the teachers quickly began to complain of
Sebastian’s lack of participation. Joanne asked about the various methods they
used with him but wound up instructing the teachers on effective strategies.
Joanne also worked
with Sebastian at home. She tried to prepare him for participation in morning
circle time by putting together what amounted to mini oral reports complete
with photos each night. The next day in class, though, Sebastian simply read
off the poster board.
Then one day early
on the school lost him. Although Joanne had warned the school that Sebastian
ran away whenever he got scared or upset, he still managed to get away, and the
school, which sat next to a highway, left their doors unlocked. Sebastian was
found unharmed, but Joanne knew it was time to find a lawyer.
“I stopped being
the mommy and started to be the advocate.”
The next day she
got the approval for private school. “So I had private school funding and
nowhere to send him.”
By that point
Joanne said, “Sebastian had severe school anxiety. Everyday he cried. Every day
he begged me to find him a new school. I felt I had completely failed him.”
This from a woman
who did everything, everything, in
her power to attend to the special needs of one child while simultaneously and
often single-handedly caring for every need of her other son. That’s the curse
of motherhood. No matter how much you do, you always feel you could have done
more.
“I never felt so
desperate and depleted as I did after that experience,” she recalled, a telling
statement coming from a parent with Joanne’s history.
“I just wanted to
walk my kids to school.”
That was Joanne’s
dream. To walk her kids to school. But the simple wish eluded her. She would
never join the millions of other New Yorkers in the rather ordinary routine of
walking their kids to school. Ben’s special needs required him to attend a
school located in another borough and now Sebastian would need to be bussed (once
Joanne found a school) elsewhere as well. Joanne and her husband even
considered moving to Manhattan just to make the education of their two sons a
little more manageable.
“We’ll sell
everything and move into a two bedroom in Manhattan, and we’ll walk them to
school.”
In the end the two
New York natives sold their Brooklyn home and moved to the New Jersey suburbs
to be in a school district that would serve the needs of both their children.
And while Joanne misses the life she knew in Brooklyn, she’s certain she made
the right decision.
“On the last day
of school when all of his workbooks came home, I opened them up, and they were
all blank.” She realized then that kindergarten had just been “a babysitting
service.”
Through it all
Joanne never stopped working her day job. She is a special education teacher in
a preschool in Brooklyn, which she says in no way prepared her for the life she
now lives. Although she no longer resides in the city, Joanne still drives into
Brooklyn each day for work. She gets her kids off to school, leaves for work
and returns home just in time to get her kids off the bus.
“Sometimes I wish
I could do another job. It’s good and it’s bad. I have a parent’s perspective,
but sometimes I relate to the parents too much emotionally. I never get the
break.”
No, she certainly doesn't, which is what I find so astonishing. I’m sure we’d all like to think
we’d do the same in Joanne’s position. We would remain strong. We would do
anything for our child. We would persevere. But I question myself. Could I
really do it? How can anyone do it? It seems almost beyond human capability.
But Joanne manages, and she does so with her career, her marriage and her humor
in tact. Those are things I find difficult to handle on any given day, and I’m
not nearly under the strain Joanne is.
I know I can’t
change things for Joanne, but I can in my small way with this piece pay tribute
at least to a woman who is remarkable in her extraordinary strength, unflagging
determination and unbreakable spirit. More than admire Joanne, I am in awe of
her.
Joanne is working
on a memoir about her experience raising two sons with severe disabilities. Stay tuned to Sperk* and One Funny Motha for more information on the memoir.
photo credit: atlnav via photo pin cc
photo credit: atlnav via photo pin cc
Thinking of Joanne and her boys. I hope she has a good support network for herself because what she does is monumental and stressful. I send her love and strength.
ReplyDeleteThank you for your kind words. I have wonderful friends and family. Even though they can't physically help me with the day to day stuff, their emotional support and acceptance of my boys give me what I need to get out of bed. Of course, my greatest inspiration comes from knowing all that I have to do....is nothing compared to what my sons have to do.
DeleteBest,
Joanne
Joanne,
DeleteThis is beautiful: "Of course, my greatest inspiration comes from knowing all that I have to do....is nothing compared to what my sons have to do."
Thank you for being a Wednesday's Woman.
Thank you for sharing Joanne's incredible, inspiring story. I've asked everyone I know with long years of experience with kids (doctors, therapists, teachers) — are we seeing an explosion of autism today? Or does better diagnosis account for the numbers (1 in 88 nationally, 1 in 49 in NJ). Like so many people, I didn't know any children with autism (or ADD, ADHD, etc.) growing up in the 1970's. The answer I've been given is in two parts; yes, there are more children with autism, and the cause is unknown. And yes, we are better at recognizing and diagnosing children.
ReplyDeleteThe other reality is, 30 years ago when I was a kid, children with special needs were not "mainstreamed" — so, if those children were living in my neighborhood, I was not aware of them or their families.
Foremost, we owe our children (this generation, and the next, and the next) a discovery as to what causes autism and a cure; but equally as important, we must adjust our public schools and institutions to sufficiently provide for their education and care, NOW.
We cannot expect individual families to struggle for solutions in isolation — and risk financial and emotional bankruptcy in the process. These are OUR children, too. We must, must, must provide for them.
Stories like Joanne's (written so beautifully) will help to keep raising critical awareness of their daily struggles.
Amazing. Heart breaking, spirit lifting amazing.
ReplyDeleteThis is an incredible, humbling, awe inspiring Wed Woman post. Thank you for sharing her story and ongoing journey. It really shows what strong advocates we have to be with both doctors and schools and how important it is to trust our instincts when we feel something is wrong. Incredible post!
ReplyDeleteJoanne,
ReplyDeleteYou are Wednesdays Woman everyday of the week!!! Keep Rockin!
xo